Appreciating life with Multiple Sclerosis

Jacquie Smithson’s multiple sclerosis (MS) symptoms started 30 years ago with optic nerve inflammation. She was a busy junior doctor at the time and brushed it off as an isolated incident, until she began to have other symptoms.

“I developed a ‘foot drop’ and numbness in my lower limbs, but I tried to ignore it as it came and went,” the gastroenterologist consultant tells MedTech Views. “Eventually, I had a lumbar puncture and a visual evoked potential test. The results were consistent with relapsing-remitting MS, but I just buried my head in the sand and carried on.”

MS is a chronic autoimmune disease in which a person’s immune system attacks the protective layer (myelin) that surrounds their nerve fibres, disrupting the signals that travel to and from the brain and spinal cord. This can cause problems with vision, movement, balance, and bladder and bowel issues, among other things. With relapsing-remitting MS, you have relapses (symptoms getting worse) followed by a period of recovery (remitting).

The lumbar puncture involved removing and analysing a sample of Jacquie’s cerebrospinal fluid (CSF) surrounding her brain and spinal cord. Using special medical technology, doctors were able to identify certain signs of MS, like a high white blood cell count and evidence that her myelin was under attack by her immune system. Another diagnostic test of her CSF, called electrophoresis, showed high levels of antibodies that indicated the possibility of MS.

For the visual evoked potential, Jacquie had small electrodes placed on her scalp that measured her brain’s response to visual stimuli like a flashing light or a moving checkerboard pattern on a screen. The medtech tested how quickly signals travelled from her eyes to her brain; a delay in this process showed loss of myelin around her optic nerve, which is a key characteristic of MS.

“About five years after the first diagnosis, I was having more symptoms and finally went for an MRI, which definitively confirmed that I had MS,” explains Jacquie. The magnetic resonance imaging (MRI) scan highlighted lesions on her brain and spinal cord that indicated damage to the myelin. “Getting the MRI and engaging with the diagnosis and neurology team allowed me to come to terms with the diagnosis and start treatment.” She was very physically able for many years and didn’t really talk about her MS.

When the COVID-19 pandemic hit, things changed. “I was involved in front-line care, I was exhausted and stressed, and my symptoms, especially my lower limb weakness, deteriorated significantly,” remembers Jacquie. “Although I’ve made some recovery, I still don’t have all my functions back. I can walk a bit, but I use a wheelchair at work.”

Jacquie has since become more open about having MS and even finds that it helps create a rapport with her patients. “It’s important to be visible and be more public about it to change people’s preconceptions,” she notes.

In addition to heading up a staff disability group at work and offering support in her community, Jacquie recently did a thousand-mile cycle along the length of Great Britain on a tricycle with her wife Sarah and her best friend to raise funds for the MS Society.

Her advice to others with an MS diagnosis? “It’s important to grieve but not think the worst, live for now, appreciate what you have and don’t go down a dark tunnel. If things get worse, yes, you have to adapt, but they’re valuable life lessons. Life can’t be perfect for anybody.”